To the Doctors Who Had Little Patience With My Son With Autism

When anything happens outside their child’s normal day-to-day routine, moms of children with special needs immediately begin to calculate how much of an impact it will have on their children and families. Most of the time, it’s a happy adjustment, like vacation — or minor, like the shake machine. Sometimes though, life comes at you with a big whammy, and your family goes from the windshield to the bug overnight. What do you do when your child with special needs has a serious medical situation, and it has nothing to do with his special needs?

This recently happened to us. The nurse from my son’s school called me at work. He has an anxiety disorder and frequently has health worries, so she calls me a lot. Nine times out of 10, it’s really nothing to be concerned about. This time, however, she informed me that he appeared to have dislocated his knee during P.E. My husband, father and brother have all had this injury. It runs in the family, so I knew immediately what we were looking at: weeks on crutches, a knee brace, and visits to doctors and hospitals for X-rays and other tests — possibly surgery if the ligament was torn.

My heart sank. He was terrified and in pain. So my first order of business was to get him home from school. My son is large for his age and has motor control problems. I wasn’t sure if he could walk at all. The nurse seemed to think he should go straight to the emergency room. I, however, thought we should go to our trusted family doctor first, so I called for an urgent appointment. I called my husband and told him he had to leave work. My mom went to get my son. The nurse and P.E. teachers got him into our car, but my mom couldn’t get him out again. They waited in the car until my husband made it home, and he got my son transferred into his car and to the doctor. I knew our doctor, who knows my son and his issues well, would be the best place to start. If by some miracle the knee was not badly injured, we could avoid the whole hospital and X-ray situation and not expose him to additional stressors.

The news was not good. A dislocated kneecap and a possible torn ligament. He needed to go to radiology immediately for an X-ray, and he needed to see an orthopedic specialist right away. He was going to be on crutches for several weeks. I started calculating again immediately. My son’s autism and anxiety combine to make the following hard for him: waiting. Crowds. The unknown. Meeting new people. Talking to strangers. My biggest worry and fear was happening. I was going to have to take my son to new doctors.

My son has a medical diagnosis, and you would think most medical professionals would understand this, but in our experience they are not always understanding of my son’s refusal or inability to answer questions directly, look someone in the eye, or follow instructions. When we finally got into the orthopedist, he scoffed at my son needing help to get his leg up on the table. The X-ray technician couldn’t understand my son’s panic over their insistence that my husband not come into the X-ray suite. The MRI technician couldn’t understand why my son jumped every time the machine made a noise. They had little patience with him, and the average doctor’s practice doesn’t make the allowances my son needs. He needs more time to walk down the hallway to X-ray. He has a strong aversion to ink, so when the nurse hands him a clipboard and pen, he panicked a little. He needs a little more reassurance that we can handle the thigh-to-ankle length knee immobilizer. His questions about how he was going to get in the car weren’t meant to be rude — he was just taking his new situation to every possible conclusion in his mind.

We are slowly getting back our equilibrium. He’s gaining a little expertise on his crutches. The swelling is down and the pain is less severe. The testing is over, and we are only waiting on our next orthopedics appointment for the next step. Physical therapy starts soon, and that holds another whole set of unknowns, with new people and places.

We have fought a long time to find the best place for my son to belong. He fits in pretty well in his day-to-day routine. His teachers, his friends, his sisters’ friends and our frequent contacts, such as his doctor and counselor, know him and accept him as he is. So my entreaty to all the medical professionals out there who do not specialize in autism is please, please try to accept your patients with autism as they come to you — as just another person who needs your help!

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Leah Gregory has been married for 24 years and lives with her husband and two teenagers. Her day job is school librarian. She has been blogging privately for 12 years and recently decided to publish some of her experiences with her son’s autism diagnosis in order to help others.